Unmotivated (updates)

I don't know why I've been dragging my feet to post. I have many things that I could talk about and have contemplated posting about but for some reason I just don't have the motivation. This is kind of a forced post because I don't want to make this blog something that fades into the background where I lose precious memories of my daughter's life because I was too lazy to log on and type something out. So here it goes; a mishmash of updates:

Therapy - Things have been going well. I can't pretend that 3 therapy sessions a week doesn't get old because it definitely does. I also can't pretend that having a bunch of exercises with each type of therapy isn't a hassle to say the least BUT the exciting news is that they are working. The Chubs has made fantastic strides in every area and it's really made me realize just how important these sessions are for her. I had no idea the extent of her sensory issues until we started therapy. Thank God that we did. As a result of therapy The Chubs is now feeling much more comfortable reaching for things no matter what their texture, size or shape, putting things up to her mouth (I never thought I would see the day), putting her hands on the floor regardless of the surface, and she is willingly opening her mouth for the spoon, dropper, and vibrating teether (major feat). Again, anyone with a normally developing child would think these things are nothing and most have children that were doing this at 4 months old, but for The Chubs, being the sensitive little girl that she is, these are huge steps. Ones I would never have dreamed we would take because of her defensiveness to her environment. In fact she has finally found a few things that she really trusts near her mouth:


Yes, that is a tampon. Her feeding therapist will be so proud.

Feeding - This kind of goes along with therapy but overall feedings have become much easier. Eating is still not her favorite thing. I'm not sure it ever will be. But bottle feedings have improved and solids are coming along. Teething doesn't seem to effect her eating nearly as much as it used to. She is learning to eat through the pain and I'm so proud of her. We weighed her ourselves the other day and she was almost 15 lbs. Our target is 15 lbs or more at her 1 year mark. That means she will have tripled her weight since birth. Definitely something worth celebrating. We are still doing stage 2 purees. Moving slowly is key with her. We don't want to give her something that freaks her out and regress in that department. Our next step will be mashed table food. I will probably start introducing this next week. The challenge is finding food items that are milk and soy free. It would be easy to just mash up whatever we're having for dinner but since she has the milk and soy intolerance we'll have to figure out a few things to offer that she can handle. Did I mention she loves sweet potatoes?


Growth - According to our own measurements, The Chubs is now on the growth chart for height! She is right at the 3rd percentile. I am nothing short of thrilled about this. I wish I could post her growth pattern since birth. She was on her own growth curve (less than 1%ile) until about 8 months and then she just started to shoot up. Of course this makes her weight for height less because she's taller now but I'm sure it will eventually catch up.

Birthday Girl - My little girl will be 1 year old next week. We have so much to celebrate. This has been the most challenging year of my life but so rewarding. When I think back to last Thanksgiving, eating our turkey meal in the cafeteria of Children's Hospital, I realize just how far we've come. I remember feeling so much uncertainty, not knowing what was going on with her, or when we would be able to bring her home, what the long term effects would be, and if she would ever thrive like a normal child. Here we are almost one year later and my little girl is laying in her crib babbling away and happy as can be (with the exception of teething). It has been so much more work than I ever imagined. I knew having a child would be challenging, exhausting, and at times frustrating, but I never imagined that I would have a child that needed so much extra care. I thank God that He entrusted her life with us. That He knew we could handle this and give her the care she needed. Although at times I have wished I just had a "normal" child, I wouldn't trade this experience or The Chubs for any other child in the world. Every frustrating feeding, every grueling procedure, every long appointment, every sleepless night, they were all worth it. And though it is sad to say goodbye to the first year of my baby's life, I welcome this next one with open arms. I am ready to move forward and have great hopes for the coming year.

2 Days Old

Almost 1 year

So much to do, so little time.

Eating, for the most part, continues to go fairly well around here. I have finally started to relax, even on the days where The Chub Muffin eats a little less than normal. I no longer go into full-out panic mode. I've learned to try to look at the big picture. She ate exceptionally for over a month, she is allowed to have a day here and there where her intake is down. Solids are going well. We are making progress. Her intake is still not huge but I'm shifting her schedule (which should've probably been done when we started solids) to a 4 hour schedule. The 3 hour schedule was just too much now that she's having 3 solid meals a day along with 4 bottles (excluding her early morning and late night feedings). She needs some time to feel hungry and anticipate food. I'm hoping once she's adjusted to the new schedule that feedings will improve a bit. She's doing stage 2 purees now. We're moving slowly due to her sensory issues and oral aversion. The feeding therapist said we could stay at stage 2 for a few months and be completely fine. Whenever we bring anything new into the picture it takes awhile for her to get used to it and comfortable with it, so bringing in the sippy cup has been, well.... challenging.

This girl is NOT in love with her bottle, so as far as that goes, it shouldn't be a big deal to ditch the bottle in the near future. The main hurdle will be getting her to drink from something else.

Our OT came today to work with The Chubs and she is going to request a PT (physical therapist) to come twice a month so that at our sessions she can focus most of her attention on her eating and sensory issues. One hour is just not enough to cram in everything together. Plus, The Chubs gets pretty tired and a little overstimulated with so much activity.

I'm so thankful she's getting the help she needs but I have to be honest. I am exhausted. I'm tired of not only trying to feed her everyday and deal with refusal, but spending every other minute doing therapy exercises. I literally can not even count or remember all of the exercises I should be doing with her on a daily basis. There are a million feeding exercises and all these different items I need to slowly introduce at meal time and try with her. There are a million more sensory exercises and therapies that she needs to be getting daily to help regulate and organize her nervous system, along with many other gross and fine motor exercises that should only really be done on an empty stomach so she doesn't puke up her last meal.

I wouldn't trade The Chubs for any other baby in the world. She is my precious miracle, I love her so much. Sometimes I do, however, wish that I could just be a mom to her, and she could just be my daughter instead of a doctor/patient, teacher/student role 24/7. I wish I could take her to the zoo for a day without worrying about her food intake or missing any of her other "exercises" and throwing her into an overstimulated state. But normalcy has never been in cards since day one. I just wish there were more hours in the day. That's all.

Kind of boring but ...

What an amazing writer I am. I know just how to captivate a reader through my thought-provoking and interest-peaking titles.

I know my posts have been few and far between and somewhat boring at times. This one is no exception. Basically I just wanted to update that it has been a full 3 weeks of good eating for the Chubadub. I was able to weigh her at the Feeding Therapy appointment today and she weighed 14 lbs! That means she's gained 1.5 lbs in a month which is amazing for her (she has never gained more than a lb. in a month before).

Today she showed off and ate an entire baby food jar of applesauce and 1.5 oz of rice cereal for the feeding therapist. Again, I know this doesn't sound like much to the average person, but I can't stress what a victory this is for her. She literally would not open her mouth for a spoon 4 weeks ago and is now averaging around 4-5 oz of solids a day. I never thought I would see the day. I had visions (nightmares) of G-Tubes and a long road of tube feeding and oral aversion to just about everything merely a month ago.

Bottle feedings are still a struggle around here. The therapist mentioned that next week she will be working with The Chubs to transition to a sippy cup which will be a huge task. Every time we introduce something new that is expected to go inside her sensitive mouth, it's a major hurdle. However, I'm confident that if anyone can help her, it's our OT. I mean, I owe this lady in a serious way for getting my child to eat from a spoon. As far as I'm concerned she's nothing short of a miracle worker, and if she could convince my child to eat off a spoon, then she can do anything. For realz.